3.2 Explain the purpose of advance care planning in relation to end of life care

This guide will help you answer 3.2 Explain the purpose of advance care planning in relation to end of life care.

Advance care planning shapes the support and care given to people who are facing life-limiting or terminal illness. It helps them to talk about, record, and share their wishes and preferences for future care, in case there comes a time when they can no longer speak for themselves.

Advance care planning gives the person control, even in circumstances where physical or cognitive decline may take away their ability to communicate. It allows people to make choices about medical treatment, care settings, and personal goals. Staff, families, and healthcare professionals use this guidance to respect and act according to the person’s wishes.

This guide covers the purpose and process of advance care planning, and why it matters in end of life care.

What Is Advance Care Planning?

Advance care planning is a voluntary process. It encourages people to think about and write down what is important to them as they approach the end of their lives. This process often covers:

• Medical treatment and interventions the person would or would not want
• Preferences for pain control and symptom management
• Where the person wishes to be cared for
• Who they would like involved in their care and in decision-making
• Spiritual, religious, or cultural wishes
• Details about organ or tissue donation
• Any other values, beliefs, or priorities

An ‘advance care plan’ is sometimes called an Advance Statement. It is not legally binding, but it guides decisions made on the person’s behalf if they lose capacity to make choices.

A legal document called an Advance Decision to Refuse Treatment (ADRT), in contrast, can be used to refuse specified medical treatments. A Lasting Power of Attorney (LPA) can be appointed to give another person the right to make decisions if the individual cannot do so.

Why Advance Care Planning Matters

Advance care planning puts the person at the centre of their own care. It gives them a voice and control over what happens to them.

Many people fear that their wishes will not be known or respected if they become unable to communicate. Advance care planning addresses these worries by capturing preferences early, when the person can still participate in decisions.

Some reasons why advance care planning is important are:

• It respects the legal and ethical principle of autonomy: The right of every person to make their own choices, and be listened to, even in illness.
• It reduces stress for families and carers: When wishes are known and recorded, relatives are spared the burden of making difficult choices alone, or guessing what the person might have wanted.
• It guides professionals: Healthcare workers can act confidently, knowing what the person feels strongly about and how to provide care in line with their values.
• It reduces unwanted or unnecessary treatments: Some people do not want life-prolonging treatments that have little benefit. Advance care planning can help them avoid interventions they find upsetting or pointless.
• It helps with planning for place of care: People can say where they wish to be—at home, in a hospice, hospital, or care home—and the team can support that choice when possible.
• It encourages difficult conversations: Talking about death and dying is not easy, but planning helps people discuss hopes, fears, and expectations well in advance.

Advance care planning is not a one-off task. It is a continuing conversation that can be adapted as circumstances or views change.

What Does Advance Care Planning Cover?

Advance care planning covers a range of topics. The main ones include:

Preferences About Treatment

People can express which treatments or interventions they would want, refuse, or consider in certain circumstances. These might include:

• Resuscitation (CPR) if their heart stops
• Artificial ventilation
• Use of antibiotics or surgery
• Feeding through tubes or drips if they cannot eat or drink

Recording these preferences means that if they lose the ability to express their wishes, others can respect their choices.

Preferred Place of Care and Death

Many people want to remain at home at the end of life, surrounded by familiar faces, or perhaps prefer a hospice environment. Advance care planning allows people to document these wishes, making it clearer for professionals and families to act on them.

Comfort and Symptom Control

Pain, breathlessness, anxiety, and other symptoms are common at the end of life. People may want to specify what they consider acceptable and what they would wish to avoid. For example, some may want all possible measures to ease pain, while others may prioritise remaining more alert, even if it means accepting some discomfort.

Involving Others

A person may have strong feelings about who should be involved in their care. Naming key people—family, close friends, spiritual advisors—or who they do not want involved can be made very clear in an advance care plan. Contact details can be included, so there is no confusion at a critical time.

Cultural and Religious Beliefs

Beliefs and rituals around dying, death, and after-death care can shape a person’s wishes. Advance care planning encourages people to record these beliefs, such as prayers, rituals, specific clothing, or food preferences.

Organ and Tissue Donation

People can note whether they wish to donate their organs or tissues following death. Having this stated helps professionals and relatives act quickly when needed.

Legal Considerations

People may wish to put in place a legally binding Advance Decision to Refuse Treatment, or appoint a Lasting Power of Attorney. Planning encourages people to get advice and complete these documents if they want further legal protection.

The Role of Communication in Advance Care Planning

Successful advance care planning depends on clear, open discussion. This means:

• Encouraging people to have honest conversations with loved ones
• Making the person feel listened to and respected
• Using language that is straightforward and sensitive
• Checking that the person understands the options available and the likely outcomes
• Respecting that people may not want to discuss death or make plans right away

Workers need to support these conversations, sometimes over a series of meetings. This cannot be rushed.

Questions that can help include:

• What matters most to you now?
• How do you feel about the treatments being offered?
• Are there things you hope to avoid?
• Is there anyone you trust to speak on your behalf if needed?
• How do your values, beliefs, or religion shape your wishes?

Advance care planning is not only about medical decisions. It covers all aspects of what a ‘good death’ means to the person. Clear, sensitive communication is at the core of this work.

Benefits for Patients

For people who have made an advance care plan, the benefits are often very clear. They:

• Feel more in control of their care and their future
• Are reassured that their voice will be heard, even if they are unable to speak for themselves later on
• Have their beliefs, values, and preferences treated with respect
• Are less likely to receive care or treatments they do not want
• Have reduced anxiety about what might happen at the end of life

People often report an improved sense of peace and wellbeing when their wishes are recognised, and they know steps will be taken to honour them.

Benefits for Families and Loved Ones

Advance care planning supports relatives and friends by making preferences known. Some benefits include:

• Giving clarity and confidence: Relatives know they are acting in line with the individual’s stated wishes.
• Reducing guilt, worry, and family conflict: Decisions are based on clear evidence, not guesswork or disagreement.
• Helping with grief: Families have reassurance that their loved one’s wishes were respected, which can help them in the bereavement process.

Supportive advance care planning provides emotional protection for all involved.

Benefits for Health and Social Care Workers

Health and social care staff benefit because they:

• Have clear guidance when making decisions under pressure
• Can avoid giving unwanted or futile treatments
• Are supported to respect dignity and choice
• Find it easier to coordinate care that matches the person’s values

Workers need to understand the legal and ethical responsibilities surrounding advance care planning and follow organisational policy. Good record-keeping and communication are vital.

Recording and Sharing Advance Care Plans

Recording the person’s wishes is a key task. Plans should be:

• Written in clear language
• Shared with everyone involved in the person’s care, with consent
• Updated as needs or wishes change

A copy should go in the individual’s care plan, and professionals such as doctors, nurses, social workers, and ambulance services may need access. Family and the person’s main carer should have a copy if the person gives consent.

It is important to talk about confidentiality and privacy. Only those directly involved in care or decision-making should access the plan, unless the individual agrees to wider sharing.

Plans must be revisited at regular intervals or when a person’s situation changes. Advance care planning is never set in stone, and can be updated at any time.

Overcoming Barriers

Some people find it hard to talk about dying or future care. Common barriers include:

• Not wanting to upset loved ones
• Fear of having difficult conversations
• Emotional distress related to life-limiting illness
• Cultural or religious influences around talking about death
• Uncertainty about disease progression

Workers can help by:

• Giving accurate information about what advance care planning means
• Reassuring people that they are in charge of the process
• Supporting a pace that suits the person
• Signposting to trained professionals or advocacy if needed

Overcoming these barriers supports dignity and quality of life for the individual.

Legislation and Guidance

Advance care planning in the UK is supported by law and national guidance. Key points include:

• The Mental Capacity Act 2005 gives a framework for making decisions for people who lack mental capacity.
• Advance Statements (non-legal) and Advance Decisions (legal) allow people to record wishes about care and treatment.
• Lasting Power of Attorney arrangements let people appoint someone to make decisions on their behalf when they lack capacity.

All staff should be familiar with local and national guidance on advance care planning.

How Advance Care Planning Improves End of Life Care

Advance care planning is person-centred. It enables care teams to deliver support that matches the individual’s wishes. Staff can:

• Make decisions quickly when urgent situations arise
• Reduce medical interventions the person would not want
• Support families facing distressing choices
• Focus on comfort, wellbeing, and dignity

It helps to avoid confusion or conflict at the end of life, ensuring a peaceful experience and respect for the person’s entire life story.

Final Thoughts

Advance care planning protects the rights, dignity, and wishes of people who are reaching the end of their life. It turns conversations about death into practical actions that put the person at the heart of their own care. Those who create advance care plans feel more at ease, knowing their choices will direct future health and social care support.

People may not always want to talk about dying, but advance care planning proves its worth every day in UK health and social care. By supporting each individual to have their voice heard, care teams can offer the best possible support—compassionate, respectful, and shaped by what matters most to each person.